It has been very busy especially since we have been able to work around the house and go to events with Faith doing so much better. Let's see...We have been working on our front yard and making incredible progress, but also having some fun. On June 21st, we saw the Emancipation Proclamation in person after Jesi waited 6 hours in line with 7 children (they did get to run around the Henry Ford Museum while she actually waited in line wit Faith). Jesi and I got to see Ann Coulter speak last Thursday 6-7p (free event) then we hurried home to take all the kids to a magic show by 7:30pm (tickets from Rainbow Connection). We went to a Steven Curtis Chapman concert with the kids on Sunday night (tickets from my job). Then Jesi took the kids to a picnic for the Rainbow Connection on Tuesday morning/afternoon (free event put on by Sterling Heights fire fighters). Crazy schedule, but lots of fun for all.
When I get some time this weekend, I will try to get the before and after photos up for Faith.
This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.
Thursday, June 30, 2011
Thursday, June 16, 2011
Day of Deliverance
Look...that bear was scared stiff by Faith's distractors. |
Early this morning waiting for the OR time. |
Mom can you hurry up and get these things off of me. |
Oh the things that happen when mom and dad aren't around. |
Stunned with amazement, Faith can't believe they are gone. |
Left side which had to be redone a couple of times, but it's done. |
A quick side profile so you can see the difference. |
Faith is now 25 lbs and 33 1/2" tall...and she would be taller with her back straightened out. She is getting big. Now begins the work of learning to eat by mouth again. Oh, I should not forget. We met a little girl beside us who had a jaw distraction a couple of years ago and you could barely tell except some small scars. She didn't have all of the trouble, but it was nice to see how well she progressed.
A progression with pictures to recap will be coming so you can see how much different Faith looks.
Tuesday, June 7, 2011
There Outta Here...well not quite yet
Faith saw Dr. Green, our ENT, today. He thought she looked better than when we quit distracting, and I would have to agree. He said her bone had filled in nicely, and she is ready to have those crazy distracters removed (I added crazy). Jesi forgot to take the pliers with her so he couldn't take them out in the office for us today. Now we will have to wait for an OR to be scheduled for next Thursday. (joking about pliers) They will gas her to knock her out so they can remove the Darth Vader distracters, but she will not need to be intubated. What a change, well I wish I could say from a couple of weeks ago, but the change has taken 3 months now. God is good, and His mercy endures forever.
We are happy to be off to Ohio for my niece's graduation party this weekend. We haven't been to visit since Christmas and before that we think it was June of last year when we were down there. It is amazing how one little girl can alter the course of the whole family. With all of the stuff happening, we have either not been able to drive a short 2 1/2 hours to visit the family or simply not been comfortable enough with her state to make the trip even when we could have eeked out the time.
O-H...I-O...........I wanna go back, I gotta go back to O-HI-O.
We are happy to be off to Ohio for my niece's graduation party this weekend. We haven't been to visit since Christmas and before that we think it was June of last year when we were down there. It is amazing how one little girl can alter the course of the whole family. With all of the stuff happening, we have either not been able to drive a short 2 1/2 hours to visit the family or simply not been comfortable enough with her state to make the trip even when we could have eeked out the time.
O-H...I-O...........I wanna go back, I gotta go back to O-HI-O.
Monday, June 6, 2011
Doctor Appointment Tomorrow
Well, tomorrow Faith will see the ENT to find out if the distracters can come off of her face. I hope that we can schedule this quickly so it can be done very soon. She seems so bothered overnight, and we hope their removal will help her sleep more easily...so we can sleep.
We will let ya know....
We will let ya know....
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